Abstract
Background
With improvements in antiretroviral therapy (ART), the life expectancy of people living with HIV is increasing towards that of the general population in many countries. As people living with HIV live longer, many are experiencing co-morbidities of age including advanced, life-limiting illnesses. Research has since highlighted both the need for and effectiveness of palliative care for people living with HIV. Therefore, as these co-morbidities become more prevalent, HIV services will increasingly need to draw on a wide range of medical disciplines, including palliative and end of life care. To ensure that research and subsequent policy and practice recommendations for service design and delivery reflect the wishes and priorities of people living with HIV, it is important that people living with HIV are supported to be involved in, and co-produce research in this field, where they wish to. The current study provides reflections from a co-production team including people living with HIV, considering successes and challenges of research involvement in this field.
Main text
Reflections were gathered from the multi-disciplinary steering group meetings, attended by the co production group. Some members of the co-production were researchers, some were charity representatives and some had lived experience of HIV. These reflections were part of a study that aimed to enable people living with HIV to explore and consider what is important for them at the end of life. Steering group meetings were recorded and transcribed verbatim. Reflexive thematic analysis was used to code data and develop themes relating to how people living with HIV were involved in the research.
Conclusions
This paper shares insights from a co-production group, including people living with HIV, on designing and delivering palliative care research. As more adults with HIV require palliative support, aligning care with their needs is essential. Involving people with HIV in research can improve future services and promote fair access to end-of-life support. This paper provides reflections on achieving this.
Keywords: Palliative care, HIV, Qualitative research, Social stigma, Patient involvement
Plain language summary
The introduction and advancement of medication such as antiretroviral therapy (ART) has helped reduce transmission of HIV. This has meant that fewer people are dying as a direct result of HIV, and the life expectancy for people living with HIV is almost the same as the general population in many countries. As people living with HIV are living longer, many are being diagnosed with age-related advanced illnesses, such as cancer, respiratory illnesses or dementia. It is important that HIV care services work together with other medical disciplines, such as palliative and end of life care, to ensure a positive care experience in line with a patient’s wishes. Palliative care can be useful to support people living with HIV who are approaching the end of their lives, with or without another illness. Some research suggests that people living with HIV may face barriers in accessing palliative care services. Therefore, it is important to hear from people living with HIV how they would like to be supported towards the end of their lives, so services can be designed with the voices of lived experience at their centre. Research and codesign are needed to gather the information needed. This paper outlines reflections from the co-production group, including people living with HIV, from a research project about how to support people living with HIV to be involved in research about palliative and end of life care.
Background
It is estimated that there are over 38 million people living with HIV worldwide [1]. With the introduction of antiretroviral therapy (ART), the life expectancy of people living with HIV is now approaching that of the general population in many countries [2, 3]. An estimated 28 million people receive regular ART treatment [1]: in many cases, ART can reduce a person’s viral load to undetectable levels, helping to maintain a healthy immune system and not pass on the virus [4, 5].
In places such as the UK and Europe, where access to ART is high, figures estimate that the proportion of HIV-infected patients aged 50 years or older will increase from 28% in 2010 to 73% in 2030 [6]. In these situations, although infection rates have fallen, co-morbidities of age (particularly for chronic non-communicable diseases) are increasing [7]. For example, a sample of over 1000 patients living with HIV found that over 50% of people living with HIV were multi-morbid, and about 30% had three or more concurrent comorbidities [8]. This evidence suggests that HIV care will increasingly need to draw on a wide range of medical disciplines, including palliative and end of life care.
Inequitable access to palliative and end of life care for people living with HIV
Palliative care is “holistic, patient-centered management of life-limiting progressive disorders” and is recognised by the World Health Organisation (WHO) as a central component of HIV care from diagnosis to end of life [9]. In 2020, the WHO and Worldwide Hospice Palliative Care Alliance estimated that globally, 28% of the need for palliative care is among people living with HIV – this need rises to 33% in low and middle income countries [10]. However, evidence suggests that the high burden of pain and physical, psychological and social difficulties experienced by people living with HIV can be managed effectively with palliative care [9]. Evidence from multiple systematic reviews has shown that both home-based and hospice-based palliative care can significantly improve patient outcomes for people with HIV, such as pain and symptom control, anxiety, spiritual wellbeing and quality of life [11, 12]. Despite this evidence highlighting both the need for and effectiveness of palliative care in HIV patient care, there are often barriers to accessing services [13], such as stigma and discrimination surrounding HIV [14], attitudes and confidence of palliative care staff [15], and perceptions and misconceptions of palliative care by people living with HIV [16].
Co-production of research with people living with HIV
Both co-production with and involvement of people living with HIV in research are essential to generate evidence that is rooted in the intricacies of real-world experience. This can inform service design, delivery and policy recommendations for palliative and end of life care for people living with HIV.
Despite the need for coproduction, impactful and ethical co-production in health research can require additional funding, resource, flexibility and willingness to deviate from traditional power structures within research projects.
Recently, some healthcare research has been co-produced with people living with HIV [17–19]. The few examples of co-produced research in health research highlight the key benefits of these methodologies. For example, a participatory HIV project stated that “the integration of the perspectives and experiences of communities enabled deeper understanding of the complex processes underlying the multiple interdependent sociocultural and contextual factors associated with HIV” [18]. Further, learnings from research involving co-researchers with lived experience of HIV illustrated that co-production contributed to tangible benefits for research projects, such as increasing the likelihood that outputs will reflect the needs, strengths and aspirations of those with lived experience [17].
Main text
This paper reports reflections from the co-production group of a palliative care research project, including people living with HIV, on the factors that supported the involvement of people living with HIV in the research.
Aim of underlying project
The reflections reported were collected over the course of a collaborative research project designed and delivered by Marie Curie and Terrence Higgins Trust: full details of the project can be found in the project report (Hughes et al., 2025; in press). The project aimed to enable people living with HIV to explore and consider what is important for them at the end of life [20]. The project consisted of two main parts, equity oriented, arts-based workshops and an online survey, both for people living with HIV. The arts based workshops drew on the No Barriers Here© method. This is an equity-oriented, arts-based approach to discussions about advance care planning that works with and alongside communities who experience health inequalities and structural vulnerability to address systematic barriers [21]. Three sets of workshops (each containing three 2 hour sessions) with people living with HIV were carried out in Brighton, UK. Each of the workshops explored a different aspect of the advance care planning process, illustrated in Fig. 1. These were repeated with three cohorts of people living with HIV.
Fig. 1.
Topics of advance care planning covered across the No Barriers Here© workshops [21]
The second part of the project utilised a novel online survey, based on themes identified in the workshops, to further explore key topics surrounding palliative and end of life care for people living with HIV. The survey included questions about: previous experiences of palliative and end of life care for themselves or others, perceptions of the impact of their HIV status within different healthcare services and settings, their priorities for palliative and end of life care and preferred information sources regarding palliative and end of life care.
Co-production group & researcher positionality
A co-production group was established for the project. Four members of this group were charity-sector professionals within the field of palliative care, two of whom were also qualitative researchers. Three members were charity-sector professionals in the field of HIV support. Two members were patient and public representatives. Multiple members of the co-production group team had personal lived experience of HIV. The group met monthly throughout the 12-month project both online and in person.
Data collection & analysis
Data presented in this paper was generated through co-production group meetings that occurred during the data collection and analysis phases of the project (n = three 60-minute meetings). These were recorded and transcribed verbatim using MS Teams in-house transcription and checked for consistency by a member of the group. . These steering group meetings did not differ in structure to the other co-prodcution group meetings that took part during the project and no formalised prompts were used to guide discussion. Instead, a meeting agenda was circulated prior to the meeting, enabling conversation to flow and cover topics pertinent to stage of the project. Remaining co-production group meetings were not included in this analysis as they did not contain discussion of how participants were recruited or supported to participate.
Transcripts of meetings were analysed using reflexive thematic analysis (RTA) [22]. This paper outlines themes relating to ways that recruitment and participation in the project were facilitated.
Three members of the research team (BH, LH, JC) carried out the initial phases of RTA to identify codes and develop initial themes that illustrated key reflections on designing and delivering palliative care research with people living with HIV. These themes were then discussed with the wider co-production group for feedback. This iterative process developed the final themes, outlined below.
Ethics
Ethical approval for both the underlying and current project was obtained by UCL Research Ethics Committee (ID: 6202/012, approval granted on 27/03/24).
Findings: Reflections on designing and delivering palliative and end of life care research with people living with HIV
Six themes illustrate key reflections from the project’s co-production steering group on facilitating involvement for people living with HIV in a palliative and end of life care research project. In included quotes, we have not distinguished between co-production group members with or without lived experience of HIV, to avoid identifiability.
Prioritising robust emotional support
Supporting and protecting the wellbeing of people living with HIV in palliative and end of life care research, therefore, should be a priority. Although this is true of all PEoLC research, steering group members felt it may have an increased importance for people living with HIV who may have experienced negative or traumatic experiences in health care settings, which in turn may shape their thoughts or feelings towards the care or experiences they may anticipate towards the end of their lives.
A particular consideration was discussion of potentially controversial topics. In recognising that unexpected topics may arise during qualitative research, ensuring robust emotional support for people living with HIV was thought to be important to account for exposure to topics people may not have been expecting to discuss. “People don’t know how to react to [discussions of euthanasia] that was raised by another participant. You could certainly look around the room and see the look on people’s faces when those comments were being made.” (Co-production group member).
The procedure for flagging safeguarding concerns was discussed with all project team members and was developed in collaboration with the co-production group. The group also advocated for access to emotional support for people living with HIV. A psychologist was present throughout workshops to offer support throughout, hold one-to-one conversations where needed, and flag any safeguarding concerns. This enhanced the support available to people living with HIV and enabled the researcher team to uphold and be aware of their safeguarding responsibilities. In addition to the presence of a psychologist in the workshops, follow-up calls were made to each person living with HIV after the workshops by project team members that had existing relationships with them.
“We have an enormous duty of care about how we follow up and make sure that people are supported. We did have to think about the physical things that we do afterwards, whether it is everybody gonna be contacted with a check in phone call.” (Co-production group member).
The involvement of staff from Terrence Higgins Trust was key for enabling robust emotional support for people living with HIV. Terrence Higgins Trust staff members are skilled, trained and experienced in providing support for people living with HIV and were also known to some of the people involved. Throughout the project, they were able to informally educate and upskill other team members, suggest improvements to the research methods or analysis based on their experience and practice, and maintain focus on wellbeing of people living with HIV.
Engagement: Building trust and rapport
The co-production group, including people living with HIV, agreed that a key element linked to the success of the project was the time invested by both organisations involved in the development of a strong relationship, and in laying the foundations for the project.
The time invested by both organisations in building relationships between the teams formed the foundation on which the rest of the research progressed. Importantly, this also formed the basis on which relationships with people living with HIV were formed; trust between the project team and people living with HIV was particularly important given the potential for previous negative healthcare experiences and mistrust of healthcare professionals experienced by people living with HIV.
“I think it’s the start of building a trusting relationship, and if we are gonna launch your [research], we need … people on board and to have that trust with us” ((Co-production group member).
Awareness of and engagement with the project among Terrence Higgins Trust service users was highlighted in several ways. Prior to the research commencing, engagement activities (led by Marie Curie and partnered with Terrence Higgins Trust) were held in Terrence Higgins Trust spaces with service users. These took the form of Life Cafés [20], to introduce the topic of palliative and end of life care without any expectations of further action or conversation. This was thought to begin to introduce the topic, build rapport with both THT staff and service users and allow Marie Curie staff to become familiar faces.
“I think that the ongoing relationship helped. So we didn’t just launch in and say oh, we’re gonna do this, can everybody come along? So I think doing the life cafes really helped.” (Co-production group member).
Thorough engagement was highlighted to have specific contextual importance for people living with HIV. Considering prevalence of discriminatory and traumatic experiences within this population, organisations (such as Terrence Higgins Trust) have worked hard to create a safe, trusting environment. Through introducing external researchers to the space, it is important to ensure that the trusting environment isn’t broken.
“But that kind of environment of trust that we work so hard to achieve is quite fragile and I would be really concerned that that might be broken”. (Co production group member)
Partnership as a conduit to successful research
As described above, Terrence Higgins Trust had an existing level of trust and rapport with their service users. Outside of this partnership, this would have taken a large amount of time and investment for external researchers to reach a similar point.
“That kind of relationship of trust is something that we work really, really hard at and it’s not easily won with people living with HIV.” (Co-production group member).
The existing trust and relationship with service users allowed researchers to share the opportunity to participate in the project with a population of people living with HIV more readily and safely than without the support of Terrence Higgins Trust. In addition, the extensive knowledge and skillset of Terrence Higgins Trust staff meant that the project could be introduced and delivered in a way that ensured participant wellbeing remained at the centre of a potentially sensitive research topic.
Therefore, working with a partner organisation in contexts such as this, can be the conduit to successful recruitment and ultimately research. Further, this partnership between organisations, and the relationship with people living with HIV will be maintained after the research ends, in a way that may not be possible for external research working independently.
“Some organizations who have existing relationships with service users, that is the conduit in making things like this happen” (Co-production group member).
Desire for impactful research and subsequent change
The steering group recognised that people living with HIV are frequently asked to be involved in research and may experience some research fatigue. Therefore, being transparent about the research aims and reimbursing people for the time they spent engaged in research activities was thought to help overcome these barriers.
“So all of us living with HIV have a massive fatigue around research involvement and that’s why quite often you do have to give an incentive to people to take part.” (Co-production group member).
Considering this potential research fatigue, steering group members with lived experience expressed that the issues that are being researched and discussed, for the most part, are not new – they have been experienced by this population for decades. Instead, there is a desire amongst participants living with HIV to conduct and be involved in research that may lead to ‘real’ change, such as policy or healthcare impact.
“We need to look at what we can do to help in the future because what made me sad is that I’ve heard all that stuff before.” (Co-production group member).
Following research contributions, informing people living with HIV about the impact of their involvement was highlighted as important. This was expressed both before the research (i.e., clearly outlining research aims and intended impacts), and after the research (i.e., any actual impacts).
“People started to ask questions about what’s the research actually about? Because they acknowledge that they were sitting around a table talking about was important to them about end of life. But how does that feed back into the research? What will it mean?” (Co-production group member).
Following the completion of this initial project, further impact-oriented research funding was secured by the team to co-develop materials about palliative and end of life care, building on the project’s findings, specifically for people living with HIV.
Benefits of arts-based methods
This project utilised an arts-based methodology to open up conversations around advance care planning for people living with HIV. The co-production group, including people living with HIV, reflected on this process and felt that using an arts-based approach promoted deeper engagement with the research questions and topics of focus. The creative activities within the workshops were seen as outlets to focus on while discussing topics that may be sensitive or seen as taboo; the activities were found to be accessible even for people who felt apprehensive about being “artistic”.
“I think if we’d have all sat around a table and just asked straight question, I don’t think we would have got the depths of the answers that we got. I think people really shared and I’m still shocked, I guess, about how much they were willing to share about their experiences.” (Co-production member).
During these arts-based activities, conversations naturally broke off into smaller groups. This allowed people living with HIV to relate to others and promoted depth of conversations. To account for this, there were multiple facilitators at each workshop: these were from each of the partner organisations, and an independent psychologist. Having multiple facilitators, all of whom were trained in the methods, was key to capture all conversations amongst the groups which each contained over 10 people living with HIV.
“We really did need all of us [in sessions]. It would have been a real struggle for just two people to do all of that and to have some of the side conversations as well.” (Co-production group member).
Impact beyond the goals of the research
Research involvement within this context resulted in some benefits for people living with HIV, beyond participation. For example, having conversations about what matters to people, and what they would like their palliative and end of life care, death and dying to be like, in this research format, encouraged people living with HIV to consider their own preferences. In some cases, this led people living with HIV to document these wishes outside of the research setting. Although this was not the aim of the research, it began to raise awareness of important topics within palliative and end of life care for participants and provided routes for documenting and sharing their preferences.
“I also yesterday did a couple of advanced care plans for people that had requested them who had come to the previous groups and that’s the first time that we had done that in partnership with THT and done them in the THT offices and from my point of view they went really, really well” (Co-production group member).
Other examples of non-research related benefits of involvement were highlighted. Some people living with HIV reported that the research had encouraged them to resume art as a hobby.
“It was an opportunity to do something that was different for them and had been. There was a couple of people that said that actually started painting again.” (Co-production group member).
Conclusions
This paper provides key reflections on designing and delivering palliative and end of life care research with and for people living with HIV. Within these conclusions we have drawn upon two core aspects of research in this field around which a lot of important reflection occurred.
Firstly, the research project from which these reflections were drawn had a very high level of retention of involvement across attendance at three consecutive workshops, for 3 cohorts of people living with HIV. Initially, the co-production group were concerned that recruitment would be challenging due to the topics being discussed. There was apprehension that the topic may be perceived as “sensitive” or taboo, given the evidence of poor end of life experiences for people living with HIV [13]. However, a total of 27 people living with HIV attended all three workshops, and 90 people responded to the survey.
Upon reflection, there were several practices that contributed to this high engagement and retention. First, early in the development of the partnership between organisations, representatives from Marie Curie held Life Café sessions in Terrence Higgins Trust spaces [20]. Life Cafés aim to find a gentle way to facilitate conversations around death, dying and bereavement, including considering preferences for care at the end of life. These in-person events enabled the Marie Curie staff to become familiar to service users and staff, beginning facilitation of a trusting relationship and introducing the topics of the research in a gentle way.
Second, the continued efforts of Terrence Higgins Trust staff to connect with people living with HIV between sessions created two-fold benefits: it encouraged sustained engagement with the project which may have reduced drop-out rates. It also enabled emotional support and debriefs by trained individuals where required. The investment of time in the development and maintenance of relationships supported meaningful and sustained involvement.
Thirdly, both people living with HIV and other steering group members reflected that people wanted to be involved in research that was innovative and had the potential to lead to change. Steering group members working in the field of HIV support highlighted how palliative, and end of life care was not a topic they had previously explored through research and this may be related to the high and sustained engagement observed.
Recommendations
Based on the reflections described in this paper, we make a number of recommendations for future research within this field:
Explore whether an organisational partnership can be a conduit to successful research. Involving a range of individuals with diverse professional backgrounds, as well as individuals with lived experience at all stages of the project, can support recruitment of people with lived experience, engagement, allow intricate research rooted in real-world professional and personal experience, and facilitate engagement with key stakeholders to maximise impact.
Consider utilising creative, or non-traditional research methodologies. Although supporting our data collection with a traditional survey was important to maximise breadth and depth of research, adopting No Barriers Here© arts-based methodology facilitated a supportive, productive environment for discussion of death, dying and bereavement.
As the population of adults living with HIV needing palliative care support grows, consideration is needed to ensure care aligns with needs and priorities. Therefore, this research co-produced key reflections on facilitating involvement in palliative and end of life care research by people living with HIV, to over the longer-term, promote impact for service design and delivery.
The shared commitment of both involved organisations to contribute to positive change for people living with HIV at the end of life has contributed to this research resulting in a number of outputs and impacts. These include national [23], UK and international conference presentations [24, 25] and securing further funding to develop materials about palliative and end-of-life care for people living with HIV. These will be made available on Terrence Higgins Trust’s website.
Author contributions
All authors (LD, LH, BH, JC, TH, MT, MB, RM, RJ) collaboratively conceptualised the study. JC, BH and LH led on data analysis. All authors provided feedback on analysis. All authors reviewed and approved the manuscript.
Funding
This research was funded by Marie Curie Small Grant Scheme (grant ID: MCSGS-23-103).
Data availability
No datasets were generated or analysed during the current study.
Declarations
Ethics approval and consent to participate
Ethical approval for both the underlying and current project was obtained by UCL Research Ethics Committee (ID: 6202/012, approval granted on 27/03/24).
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Footnotes
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- 1.Rangaraj A, Connor S, Harding R, Pinto C, Chitembo L, Ford N. Advanced HIV disease and health-related suffering—exploring the unmet need of palliative care. Lancet HIV. 2023;10(2):e126–33. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Smiley CL, Rebeiro PF, Cesar C, Belaunzaran-Zamudio PF, Crabtree-Ramirez B, Padgett D, et al. Estimated life expectancy gains with antiretroviral therapy among adults with HIV in Latin America and the caribbean: a multisite retrospective cohort study. Lancet HIV. 2021;8(5):e266–73. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Trickey A, Sabin C, Burkholder G, Crane H, d’Arminio Monforte A, Egger M, et al. Life expectancy after 2015 of adults with HIV on long-term antiretroviral therapy in Europe and North america: a collaborative analysis of cohort studies. Lancet HIV. 2023;10(5):e295–307. 10.1016/S2352-3018(23)2023:00028-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Eisinger RW, Dieffenbach CW, Fauci AS. HIV viral load and transmissibility of HIV infection: undetectable equals untransmittable. JAMA. 2019;321(5):451–2. [DOI] [PubMed] [Google Scholar]
- 5.LeMessurier J, Traversy G, Varsaneux O, Weekes M, Avey MT, Niragira O, et al. Risk of sexual transmission of human immunodeficiency virus with antiretroviral therapy, suppressed viral load and condom use: a systematic review. CMAJ. 2018;190(46):E1350–60. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Smit M, Brinkman K, Geerlings S, Smit C, Thyagarajan K, van Sighem A, et al. Future challenges for clinical care of an ageing population infected with HIV: a modelling study. Lancet Infect Dis. 2015;15(7):810–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.McGettigan P, Morales DR, Moreno-Martos D, Matin N. Changing co‐morbidity and increasing deprivation among people living with HIV: UK population‐based cross‐sectional study. HIV Med. 2023;24(3):311–24. [DOI] [PubMed] [Google Scholar]
- 8.Maggi P, Santoro CR, Nofri M, Ricci E, De Gennaro N, Bellacosa C, et al. Clusterization of co-morbidities and multi-morbidities among persons living with HIV: a cross-sectional study. BMC Infect Dis. 2019;19:1–9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Simms V, Higginson IJ, Harding R. Integration of palliative care throughout HIV disease. Lancet Infect Dis. 2012;12(7):571–5. [DOI] [PubMed] [Google Scholar]
- 10.Organisation WH. Global Atlas of Palliative Care2020.
- 11.Harding R, Karus D, Easterbrook P, Raveis V, Higginson I, Marconi K. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect. 2005;81(1):5–14. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–14. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Harding R, Easterbrook P, Higginson IJ, Karus D, Raveis VH, Marconi K. Access and equity in HIV/AIDS palliative care: a review of the evidence and responses. Palliat Med. 2005;19(3):251–8. [DOI] [PubMed] [Google Scholar]
- 14.Lowther K, Harding R, Simms V, Gikaara N, Ahmed A, Ali Z, et al. Effect of participation in a randomised controlled trial of an integrated palliative care intervention on HIV-associated stigma. AIDS Care. 2018;30(9):1180–8. [DOI] [PubMed] [Google Scholar]
- 15.Idemili-Aronu N, Onyeka TC, Okenwa UJ, Jemisenia JO, Okoli IA, Olawepo JO, et al. Knowledge, attitudes, and barriers: palliative care services for women with HIV in resource-limited settings. BMC Palliat Care. 2024;23(1):227. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Slomka J, Prince-Paul M, Webel A, Daly BJ. Palliative care, hospice, and advance care planning: views of people living with HIV and other chronic conditions. J Assoc Nurses AIDS Care. 2016;27(4):476–84. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Dembele L, Nathan S, Carter A, Costello J, Hodgins M, Singh R, et al. Researching with lived experience: a shared critical reflection between Co-researchers. Int J Qualitative Methods. 2024;23:16094069241257945. [Google Scholar]
- 18.Dias S, Gama A, Simões D, Mendão L. Implementation process and impacts of a participatory HIV research project with key populations. Biomed Res Int. 2018;2018(1):5845218. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19.Papageorgiou V, Dewa LH, Bruton J, Murray K-K, Hewlett N, Thamm W, et al. Building bridges’: reflections and recommendations for co-producing health research. Res Involv Engagem. 2023;9(1):113. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Curie M. Life Cafés - Preparing the people you support for good end of life 2025 [Available from: https://www.mariecurie.org.uk/professionals/preparing-for-end-of-life
- 21.No Barriers Here. 2025 [Available from: https://www.nobarriershere.org/
- 22.Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Counselling Psychother Res. 2021;21(1):37–47. [Google Scholar]
- 23.Dreja L, Tweed M, Hughes L, Crooks J, Holt T, Brimacombe M, et al. editors. Barriers to and experiences of palliative and end of life care support for people living with HIV. British HIV Association Spring Conference 2025; 2025; Brighton.
- 24.Hughes L, Dreja L, Holt T, Tweed M, Brimacombe M, Macrowan R, et al. OP-16 Exploring barriers to and experiences of palliative and end of life care support for people living with HIV. BMJ Supportive Palliat Care. 2025;15(Suppl 1):A8–9. [Google Scholar]
- 25.Hudson B, Dreja L, Hughes L, Crooks J, Tweed M, Holt T, et al. editors. Palliative and end of life care support for people living with HIV - Exploring barriers and experinces. Helsinki: European Association of Palliative Care; 2025. [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
No datasets were generated or analysed during the current study.